Meet John Owen and His Family

Tony & Jen Dumm sent me this letter from North Royalton , Ohio. Initially, I read it because I was curious to see if they were Massachusetts' parents. I read on because they had that gift where you feel as if you know the family.

I fell in love with the Dumms. I so could relate when Jen talked about lying down in bed with the kids at night. And I could relate when she talked about the innocence of her son and the terror that she feels (not because I have a special needs child but because I can only imagine what she goes through).

Their Web site is just as special. They are real, and I get it. I think you will too.

While we don't usually do stories on families outside of Massachusetts, I just had to share this with you.
Check out their Web site. They have the gift!

On being John Owen’s Mom
by Jen Dumm


Ok so my day is most likely like yours – actually, our days start the night before, right? Pack lunches, set the coffee, lay out the kids cloths, double check the homework – then go through the whole AM thing to getting the kids in bed by 8 or 9 pm . I call it crazy mom nuts. But a good crazy mom nuts, ya know?

We have three boys, Rutger (7), John Owen (5) (Owen) and Wade (2), 2 dogs and a very busy life. Usually, when I hear one of the boys ask, as I pass by their room well after bedtime, “Mom, sleep with me please.” Internally, I sigh and think of laundry or dishes – but occasionally, I remember that all that can wait. So tonight it is Owen or J, O, John, J bug, Owen, John Owen, buttercup, many pet names any time of day, he prefers Owen. He is 5. Looking at Owen you see the innocence in his face, the same look you’ve seen in your kids. The look back at you as they run to play, the tears of disappointment, the laughter at a funny joke, the joy of a new puppy, you see that innocence so easily in his face. As I stare at that tonight I cannot believe his little muscles, since birth, have been wasting away inside him. You see, Owen has the most fatal genetic disorder out there, Duchenne’s Muscular Dystrophy (DMD).

Laying there looking at our son, I cannot grasp what his future holds. Today, he is a typical 5 year old; you would see him on the playground with his friends and think nothing of his tad sluggish gate. You would never know that statistics have him wheelchair bound in 5 to 7 years. Everyday tasks for him will be a thing of the past, brushing his teeth, holding a telephone, eating, heck even breathing. Things that he can do now without a thought will be stripped away from him before most of us got our first job!

Owen’s body does not make dystrophin; in short his muscles will not continue to function without it. It is a progressive disease that will slow every muscle in his body to a halt. Laying here looking at his innocent face, he has no clue what challenges are ahead for him. Lucky for Owen, there are many amazing people in the world working hard to find a cure; Parent Project Muscular Dystrophy (www.parentprojectmd.org), The MDA (www.mda.org), Charley’s Fund (www.charleysfund.com) and more. Lucky for us we have Owen and we have the power of hope and faith.

Shortly after his diagnosis at age 4, we began John Owen’s Adventure, Inc. Our non-profit raises awareness of DMD and other childhood illnesses. We live John Owen’s Adventure every day with him; one click of your mouse to www.joainc.org will let you experience his journey! You will see that familiar look of innocence and we will hope that, together, Owen will not lose his before his time.

New England Center for Children to Name its Aquatic Center After Former Governor Michael S. Dukakis

This morning, the New England Center for Children (NECC®) will honor former Governor Michael S. Dukakis by naming the newly-constructed aquatic center for children with autism on the school’s Southborough campus after him.
NECC will formally open the “Michael S. Dukakis Aquatic Center,” the first building in Massachusetts to be named after the former Governor, with a planned dedication ceremony marking the occasion this morning.
Governor Dukakis and his wife, Kitty, was expected to be in attendance with nearly 200 friends and supporters, including Senator John F. Kerry, Lieutenant Governor Timothy P. Murray, and NECC CEO and Founder Vincent Strully, Jr.
When NECC was founded nearly 33 years ago, Michael Dukakis was serving as the newly-elected Governor. He believed that children with disabilities should not be confined in institutions, but should live in communities. His administration was instrumental during the mid 1980s in assisting NECC during the implementation of its community-based model of education for children with autism. Governor Dukakis’s leadership as Co-chair of the Capital Campaign for the aquatic center is testimony to his unwavering support and belief in the mission of NECC, said a press release issued from the center.

.

Parenting Traumatized Children Conference & Retreat June 26-28th

The Attachment & Trauma Network will host a conference June 26-28 on Parenting Traumatized Children.
The Conference and Retreat will be held at the Franciscan Center in Andover. It is a uniquely peaceful location for parents and professionals to meet and rejuvenate as we learn more about traumatized children. New for this year's conference: "Feelin' Good Friday" - an entire afternoon of sessions on ways to nurture and rejuvenate yourself!
Organizers say it is the "most parent-friendly conference yet, with lodging and meal options within the registration fee."
The conference registration is $425. It is an all-inclusive price (three meals per day from Wednesday evening to Saturday noon.)
For more information call 240-446-9657 or e-mail lorraine@radzebra.org
The Web site for the event is http://www.radzebra.org/
.

STUDY: St. John's Wort Does Not Appear To Have an Impact on the Symptoms of ADHD in Children or Teens

From the National Center for Complementary and Alternative Medicine and the National Institutes of Health comes a study on St John's wort and the treatment of children with ADHD...

"According to the National Institute of Mental Health at NIH, Attention Deficit Hyperactivity Disorder (ADHD) affects 3 to 5 percent of children in the United States and it is one of the most common mental disorders that develop in children. NIMH states that children with ADHD have impaired functioning in multiple settings, including home, school, and in relationships with peers. Children with chronic conditions like ADHD are reported to have higher rates of complementary and alternative medicine use and may turn to dietary and herbal supplements such as St. John's wort. However, according to authors of a new NCCAM-funded study, St. John's wort does not appear to have an impact on the symptoms of ADHD in children and adolescents.
Researchers at Bastyr University conducted an 8-week randomized, placebo-controlled, double-blind trial of St. John's wort among a volunteer sample of 54 children aged 6 to17 years with ADHD. Participants were randomly assigned to receive 300 mg of Hypericum perforatum (St. John's wort) standardized to 0.3 percent hypericin—an active ingredient in St. John's wort—or placebo 3 times daily for 8 weeks. The participants were evaluated for changes in inattentiveness and hyperactivity from baseline at weeks 1, 2, 4, 6, and 8.
While symptom improvement was noted in both the treatment and the placebo groups, the data suggest that St. John's wort had no additional benefit beyond that of placebo for treating symptoms of ADHD.
This study used a preparation of St. John's wort with a standardized hypericin content. However the researchers note that studies involving St. John's wort also standardized to hyperforin—another active ingredient in St. John's wort—could be beneficial. Hyperforin is believed to inhibit reuptake of key brain chemicals—serotonin, dopamine, and norepinephrine. The authors note that hyperforin is highly unstable and can become inactive quickly. The researchers believe that if a St. John's wort product with a higher and more stable hyperforin content became available, it would be worthy of further investigation in ADHD.
References: Weber W, Vander Stoep A, McCarty RL, et al. Hypericum perforatum (St. John's Wort) for Attention-Deficit/Hyperactivity Disorder in Children and Adolescents. JAMA. 2008;299(22):2633–2641.

STUDY: Low Birth Weight Associated with Autism, Especially in Girls

From the June issue of Pediatrics, the peer-reviewed, scientific journal of the American Academy of Pediatrics ... comes a new study about autism.

"Low birth weight was associated with a 2.3-fold increased risk for autism, with the strongest association seen among low birth weight girls.

In the study, “Birth Weight and Gestational Age Characteristics of Children With Autism, Including a Comparison With Other Developmental Disabilities,” researchers examined the records of 565 children with autism born in Atlanta, Ga., from 1986 to 1993, and matched them to a control group. They found the risk for autism was consistently higher for low birth weight girls than for low birth weight boys.

For all low birth weight children, the risk of cerebral palsy, mental retardation, hearing loss or vision impairment was higher than the risk of autism.

Researchers hypothesize that some girls are more likely than boys to require a prenatal insult, such as reduced growth or preterm birth, in the causal pathway leading to autism."

Source: Pediatrics

.

8th Annual Give Children A Chance Gala toBenefit Pioneering Autism Program

With Autism Spectrum Disorder rising in prevalence and receiving significant national attention, parents thankfully have more options than ever before to enhance the social and emotional development of affected children. MGH YouthCare has long been a leader in this field, pioneering skill-based programs for toddlers through teens and offering children with Autism Spectrum Disorder the chance to develop social and friendship skills in a safe and supportive environment. Through their summer camp, career skill development program, social skills groups, parent groups and school consultations, YouthCare has empowered hundreds of kids and their parents to make healthy decisions and lead fuller lives.
Each year, YouthCare hosts a gala fundraiser, “Give Children a Chance.” Its eighth annual installment, which will take place May 29 at 6 p.m. at the Moakley Courthouse in Boston, will be hosted by KISS 108’s Billy Costa and will feature Jimmy Buffet cover band The Baja Brothers. Event co-chairs David Long, Stephanie Long, Tim Sweeney, Tom Hamilton and Terry Hamilton are expecting more than 300 guests for this year’s event. Says Terry Hamilton and her husband Tom, best known as bassist for Aerosmith, “Ever since attending our first YouthCare event more than five years ago, we knew this was a cause that needed our support. MGH YouthCare gives kids a place where they can enjoy activities with their peers and be themselves without being bullied or teased, and that is so important for a young kid.”
Says D. Scott McLeod, Ph.D., executive director of MGH YouthCare, “Allowing children on the Autism Spectrum to build skills in a supportive and engaging environment is the surest way to prepare them for a productive, fulfilling life. It is thanks to our generous donors that we continue to be able to deliver high-quality care to hundreds of children in need.”
For more information about attending the gala or about sponsorship opportunities, contact Deb Shapiro at 617-724-2818. To find out more about MGH YouthCare, access www.mghyouthcare.org.

About the Massachusetts General Hospital: Massachusetts General Hospital, established in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of nearly $500 million and major research centers in AIDS, cardiovascular research, cancer, computational and integrative biology, cutaneous biology, human genetics, medical imaging, neurodegenerative disorders, regenerative medicine, transplantation biology and photomedicine. MGH and Brigham and Women's Hospital are founding members of Partners HealthCare HealthCare System, a Boston-based integrated health care delivery system.

Talking Information Center Celebrates 30th Year Serving the Blind

The Talking Information Center (TIC), an award-winning, statewide radio reading service for people who are visually impaired or print-handicapped, announces its 30th anniversary of service to Massachusetts residents and beyond. Staff, Board of Directors, and volunteers across the Commonwealth will begin festivities featuring the June 4th Radio Reading Day 2008. Hosted by Mary Richardson, co-anchor of WCVB-TV Channel 5's Chronicle, the special event will be broadcast live from the State House in Boston.
The non-profit TIC utilizes the talents of over 600 volunteers in studios throughout Massachusetts, providing free access to the printed word and audience-specific information through timely broadcast programming 24 hours a day, seven days a week.
"We have come a very long way since 1978, when we launched our commitment to 'turning print into sound'," stated Ron Bersani, Executive Director and co-founder, Talking Information Center. "This service is so important in helping people lead independent, informed, productive lives that we know it will continue to play a vital role in the future. Our anniversary is a great achievement, and we wish to thank all of our friends and supporters who give so much, so that others may stay informed."
On June 19, TIC officially celebrates 30 years of existence.
In recognition of this achievement, TIC is sponsoring Radio Reading Day 2008, slated for Wednesday, June 4. In the Great Hall at the Statehouse in Boston from 10 a.m. to 2 p.m., this live radio broadcast will feature elected officials, members of the media, and other notable volunteers giving short readings of informational and cultural material to TIC's audience. Representatives from TIC affiliates in Mashpee, Framingham, Lowell, Worcester, Springfield, and Dalton will also be present.
TIC seeks to enable its listening audience to lead inclusive independent and productive lives. It does this via volunteer reading services broadcast over low-power radio frequencies, cable audio channels, and the Internet to over 20,000 people from Cape Cod to the Berkshires, Lowell to Springfield, including southern New Hampshire and areas of Connecticut. Local and national daily newspapers, 20 weekly papers, current magazines, consumer information, and serialized books are typical of the offerings found on the schedule. But, its programs are not just for those who are blind, legally blind or visually impaired. Anyone who cannot hold a publication or turn pages qualifies for the service as well, and it is provided free of charge."We tell people we're just like NBC, CBS, or FOX," explained Virginia Sung, TIC Program Director. "Just a little smaller."

About Talking Information Center – located at 130 Enterprise Drive in Marshfield - is the only source of much of the information needed by residents of Massachusetts and beyond who are unable to see or hold print materials, and includes talk shows produced by people with disabilities on relevant topics that deal with reading challenges. Founded by Ed Perry of Duxbury and Ron Bersani of Marshfield, TIC's humble beginnings were launched in 1978 and included borrowed equipment, ten listeners, six volunteer readers and no paid staff. They operated the service from a tiny studio on the third floor of radio station WATD-FM in Marshfield. Today, TIC has grown to include affiliates in Mashpee, Framingham, Lowell, Worcester, Springfield, and Dalton. Over 23,000 people throughout Massachusetts and surrounding areas depend on TIC to provide them with the same information available to those with sight.For more information on Talking Information Center, call 800-696-9505 or visit www.ticnetwork.org; the mailing address is Box 519 Marshfield, 02050.

WEEKEND PICK: Sunday's Walk Benefits Autism Resource Center of Central Massachusetts

This Sunday, April 27 consider taking part in The Autism Resource Center of Central Massachusetts' 2008 Community Walk for Autism Awareness from 1 to 3 p.m.
To register, visit www. arccm.org/reg08.pdf
The event will be held rain or shine at Quinsigamond Park in Worcester.
April is National Autism Awareness Month, and the organization is also hosting a family celebration that day from 3 to 5 p.m.
For more information visit http://www.arccm.org/

WEEKEND PICK: Sunday's Walk Benefits Autism Resource Center of Central Massachusetts

This Sunday, April 27 consider taking part in The Autism Resource Center of Central Massachusetts' 2008 Community Walk for Autism Awareness today from 1 to 3 p.m.
To register, visit www. arccm.org/reg08.pdf
The event will be held rain or shine at Quinsigamond Park in Worcester.
April is National Autism Awareness Month, and the organization is also hosting a family celebration that day from 3 to 5 p.m.
For more information visit http://www.arccm.org/

May 3: American Idol Finalist To Sing At Autism Benefit Concert

The Autism non-profit organization, The Friendship Network for Children, Inc., will host a benefit concert with guest performer 2006 American Idol contestant Ayla Brown. The Saturday, May 3 concert features Alexis Ohanian, experienced vocalist and Massachusetts native, and other New England musicians, too . The concert runs from 7-8:30 p.m. at the Medway High's theater and is made possible with the support of the Medway Public School’s Special Education Parent Advisory Council. Tickets are $15 and can be purchased online at http://www.networkforchildren.org/ Red Sox memorabilia, gift baskets, and gift certificates will be given away as door prizes. There will be meet and greet time with Ayla Brown, too.
“We want to do more than just raise money,” says Nancy Swanberg, Founder and Executive Director of The Friendship Network. “We want to raise awareness of the emotional world of children with autism. Many interventions try to correct symptoms without regard to feelings; we take the whole child into consideration.” Swanberg said she founded this organization because of the extreme loneliness and isolation that often goes untreated in children with autism.
Alexis Ohanian, music therapist at The Friendship Network, explains the need for this concert. “Working here, I have seen first-hand the confusion of the children when they first arrive. After working with them, I see their quality of life dramatically improve.”
Ohanian said she is happy to use her singing to support a cause she deeply believes in.
For additional information on The Friendship Network for Children, to buy concert tickets, or make a donation, visit http://www.networkforchildren.org/

About The Friendship Network for Children, Inc: An award-winning non-profit organization in Central Massachusetts serving children with autism, families, and professionals.

April 17 Workshop: My Child is Different

Children’s Museum in Easton is hosting a workshop on Thursday night, April 17 -- Parenting 101: My Child is Different. Join licensed marriage and family therapist Natasha Edelhaus on April 17 as she leads a parenting workshop, My Child is Different. This workshop is for parents who want suggestions for children with unique needs including but not limited to: learning needs, medical needs, and strong temperaments. Come to the workshop and learn useful tips for everyday situations at home, on play dates and for helping your child feel accepted.

The workshop will be held at the Children’s Museum in Easton from 6:30 to 8 p.m.

Registration is $5. Pre-register by calling 508-230--3789; space is limited.


The Children's Museum in Easton is located in the Old Fire Station on Sullivan Avenue in North Easton Village. Admission is $6 per person; members and children under 1 are free. For more information visit www.childrensmuseumineaston.org

CoCo Key Water Resort Springs Into Charity Event Benefits Special Olympics

This week (March 30 through April 4) Coco Key Water Resort at the Sheraton Ferncroft/Boston is offering a special daily admission ticket of $30 per person. By purchasing one of these tickets, during the designated dates, 5% of gross ticket sales will be donated to Special Olympics, an organization that is dedicated to empowering individuals with intellectual disabilities to become physically fit, productive and respected members of society through sports training and competition.
To purchase tickets or to learn about other Coco Key Water Resort Spring Into Charity events visit: https://tickets.cocokeywaterresort.com/mainstore.asp?vid=3
The water resort is allowing a different charity to receive proceeds weekly throughout this month. These tickets when purchased are non-refundable.
Outside food and drink is prohibited in the water resort.
.
.

Saturday, March 15: Diabetes EXPO

Don’t miss the American Diabetes Association’s Diabetes EXPO Saturday, March 15 from 10 a.m. to 4 p.m. at the Seaport World Trade Center in Boston.
The Diabetes EXPO is everything you need to know about diabetes under one roof including exhibits featuring the latest products & services, questions answered by medical professionals, exciting lectures, cooking demonstrations, bilingual materials, speakers, FREE health screenings, entertainment and lots more!!
Admission is free.
For more information call 1-800-DIABETES or visit www.diabetes.org/EXPO.

Oct. 23: Free Gathering of Parents of Kids with ADHD

The Pediatric Behavioral Health at 148 Worcester St. in West Boylsyon with host a gathering for parents of kids with ADHD on Tuesday, Oct. 23 from 6:30 to 7:30 p.m.

Meet others and exchange tips and stories. A pediatric psychologist and a child and adolescent psychiatrist will be on hand to answer questions about assessment and medical and behavioral treatments for ADHD. This is a FREE event. For more information visit http://www.pbhealth.org/

Special Needs Legislation Hearings - Tuesday, Oct. 16

The Joint Education Committee will conduct a special education hearing on Tuesday, Oct. 16 at 1 p.m. in room A1, where testimony will be presented on special education bills that have been filed this session.
Bay State parents are invited to come and testify if you would like to speak in support of any of the bills that have been filed.
For a complete listing of bills call the Joint Education Committee at 617-722-2070 or see link at the bottom of this post.

The state government understands how committed parents of children with disabilities are to their children's education. However, it also realizes how difficult it can be for parents of school-age children to come and testify at Beacon Hill at 1 p.m. and be home in time for your children. If parents are unable to attend the Oct. 16 hearing, you can submit written testimony, and you can call the members of the Education Committee. Phone calls and letters are extremely effective.

S. 286: An Act to Maintain Transition Age Requirements for Students with Disabilities
This bill would maintain the requirement to initiate special education transition planning and transition services at age 14, rather than waiting to age 16 as now permitted under federal law. Transition services arecritical to facilitate a student's movement to post-school activities, including post-secondary education, vocational education, integrated employment, continuing and adult education, adult services, independent living, and community participation. Delay beyond age 14 (waiting until the middle of high school) is too late to facilitate the most effective transition planning for youth with disabilities. (Sen. Augustus is the lead sponsor).

H. 391: An Act to Provide Access to Information for Parents' Evaluators
This bill would amend the state's special education law to ensure that parents and independent evaluators are provided access to observe the student's current or proposed special education programs. Although state regulations currently provide parents the right to observe the school district's proposed program, school districts often place unreasonable obstacles in the way of parents, and their expert consultants' observations. Parents are entitled to full participation in the process of developing an IEP, but, without access to observe their child's school programs, they cannot obtain the information they need to fully and effectively participate with school personnel in the consideration and development of appropriate IEP's for their child. This bill will help to avoid litigation, encourages ettlement, and requires no appropriation. (Rep. Balser is the lead sponsor)

H. 547: An Act Relative to Special Education Due Process Costs
This bill addresses the impact of a Rehnquist decision by the US Supreme Court (Buckhannon, 2001) which has effectively created a two-tier system, barring many low and middle-income families from accessing special educationrights and services. This bill would reinstate parents' rights to recover attorney fees for settlements obtained as a result of litigation, as previously available prior to 2001. This is critical to encourage prompt resolution and settlement of disputes, reduce litigation costs for families and school districts, reduce the lengthy delays which harm children deprived of essential services for months and sometimes years, and help ensure that children of all income levels receive equal educational opportunities. (Rep.Sannicandro is the lead sponsor).

S.278: Act to Improve Teacher Training in Augmentative and Alternative Communication
This bill will help to ensure that teachers receive training in augmentative and alternative communication (AAC) methods necessary to educate children with disabilities who are nonverbal or who have limited speech. Thousands of children (including children with Autism Spectrum Disorder, cerebral palsy, and acquired brain injury), rely on AAC methods to interact with others, and many students are now being included in regular education. The bill directs the Board of Education to revise regulations for educator licensure so that all teachers are adequately prepared in methods of communication other than speech to facilitate interaction, to ensure that students with such disabilities can access the general education curriculum and to facilitate inclusion. (Sen. Antonioni is the lead sponsor).

S.311: An Act to Maintain Short Term Objectives for Students with Disabilities
This bill would require school districts to continue the current practice of including and maintaining short term objectives in the IEP's of students with disabilities. A recent change in Federal law removed the requirement for short term objectives, and this bill would ensure that the state practice will continue by codification in State law. The inclusion of short term objectives in IEP's is important to maintain accountability and assist in measuring the student's progress. (Sen. Creem is the lead sponsor).

S.280: An Act Relative to Special Education and Parent Advisory Councils
This bill requires the Department of Education to establish and administer,subject to appropriation, a grant program to provide financial support toparent advisory councils to support their duties. (Sen. Antonioni is the lead sponsor)

A complete list of bills is posted at: gov/legis/legis.htm#hear_mark">http://www.mass.gov/legis/legis.htm#hear_mark>gov/legis/legis.htm#hear_mark

Sept 13: Summit Academy Open House

Summit Academy at 365 Lindell Ave. in Leominster is hosting a free open house on Thursday, Sept. 13 from 7 to 9 p.m. Parents are welcome to meet with our staff and learn how our therapeutic approach creates a dynamic learning environment for students 6 to 15 years of age with high functioning Autism (PDD-NOS), Asperger’s Syndrome, ADHD and Non-Verbal Learning Disability.
A tour of this new facility will include the school's innovative classroom model and martial arts program facilities.
The school’s core curriculum meets the Massachusetts Department of Education standards, and includes Therapeutic Martial Arts and Therapeutic Tennis, Scouting and hands-on, experiential education with a ratio of one teacher for each group of 6 students. Summit Academy, a 766 Special Education School (pending), is a resource for local school districts.
For more information, contact Summit Academy Director Mike Bishop at 978-466-8002 or michael.bishop@summitacademies.org. Or visit www.summitacademies.com and click on the Massachusetts link for complete information.

AUDITIONS:Deaf & Hard-of-Hearing Adults & Children for Taste of Sunrise Production

The Firehouse Center for the Arts in Newburyport will present Susan Zeder’s award-winning play, Taste of Sunrise this fall under the direction of Bonnie Lake (Orphan Train and The Tide Shall Cover the Earth).

Auditions for this production will be held Sunday, August 26 from 10 a.m. to 2 p.m. in the Arekalian Theater at the Firehouse Center for the Arts.

The Firehouse is seeking Deaf Actors, Hard-of-Hearing Actors, Shadow Interpreters and Hearing Actors – both Adult and Children. Taste of Sunrise is set in the turbulent 1920’s, and tells the story of Tuc, a deaf boy growing up in rural Illinois who must come to terms with his Deafness, as well as his place in the world.

Deaf and Hard of Hearing Actors must make an appointment. Please bring resume and head shot. Please be prepared for cold readings from the script. There are roles for lead and supporting actors, male and female, ages 16 and up.

Shadow Interpreters/Actors must be fluent in ASL, have experience in Theatre interpretation and will be expected at a set number of costuming passes and rehearsals. In addition, the interpreters will translate the script from English to ASL. A stipend is available for these positions

There are also roles available for the Hearing, Hearing Children of Deaf parents, Adults and Children. All roles, leading and supporting, are currently available.

To schedule an audition appointment contact: Bonnie Lake at bonnielake@comcast.net. For detailed information about what roles are available, log onto www.firehouse.org (backstage news). Taste of Sunrise will run from October 25 – November 4. Rehearsals will begin immediately.

The Firehouse Center for the Arts is an arts and cultural member based organization located on the waterfront in Newburyport with a 195-seat, universally accessible theater that offers diverse programming.

Is It Autism?

The following is a glimpse back in time, written when our family was just starting our journey into Autism --- April 2005.

Is it Autism?

“We can’t diagnose,” is the answer to the question it has taken me days, weeks, months to build up the courage to ask. The question is perhaps the most important one I have uttered in my 42 years. Certainly, it is the most important question I’ve posed in reference to one of my three children. The response to this life-altering, possibly life-shattering question is a non-answer.

Prior to the meeting, I had braced myself for what I might hear. There is so much truth in the saying about not asking a question if you are unprepared to hear the true answer. I knew that a “yes” would have indeed made me crumble within, and that a “no” would have brought with it profound relief. But, the unexpected, the non-answer, was not anything for which I was prepared, and it left me numb and afraid, alone and confused.

In no way do I intend or wish to place blame upon these Early Intervention professionals for being truthful about their inability to answer my question. They have been wonderful to my child and to me, and I understand that legally, no one who works with children can officially diagnose autism without a medical degree in hand. So when I (and I assume many other concerned parents) approach them with, “Is it Autism?” they must answer the non-answer required of them, and then help us and our children in the best way they can.

However, as the mother of a beautiful, sweet, loving two-year-old girl with white-blond hair and sparkling blue eyes, who is at the least language delayed, and perhaps communication and socially delayed, or possibly worse, I’m actually looking more for their opinions, and yes, maybe their reassurance, after eight months of observing and working with my daughter, than an actual medical diagnosis.

“What do you think?” is what I’m searching for, struggling with the fact that they can’t, even if they want to, tell me their opinions, beliefs or thoughts specific to this disorder, this possible life sentence, as it pertains to my child, my little girl. I assume, though do not know for certain, that the state or whoever mandates what can and cannot be said to parents, must fear lawsuits if employees make certain inaccurate or misconstrued utterances.

Our Concern

Thinking back, I believe that I was somewhat concerned about our daughter’s development when she was about a year old. Becky was always quieter than my other two children had been. She was somewhat listless, and content to play alone with her nesting or stacking cups. She took several months to really begin to walk “smoothly,” without appearing to be slightly off-balance. People would even comment about the “cute” way she had of toddling, months after she had taken her first steps.

Although a happy, smiling child who laughed a lot, she did not interact with people the way we expected. She didn’t respond when her name was called, though she’d react to other sounds, so we did not believe that she had a hearing problem. She did not pay attention to things that you might expect a toddler to notice like our two cats that were always around her. She ambled around them as if they were not there, whereas we were always used to cats running for the hills in fear of their very lives when approached by other children. The felines knew they had nothing to fear from Becky.

Current Services

Currently, Becky receives two home visits a week from Early Intervention providers, and she attends a morning playgroup once a week through the same program. She qualified for these services over six months ago, after I expressed concern to her pediatrician that she was not speaking or communicating in quite the way I expected she would. At eighteen months old, she regressed in her babbling and interactions from what she had been doing at one year. We no longer heard “da da” or “ba ba,” she stopped responding to her name, and games of peek-a-boo were a thing of the past.

Our pediatrician encouraged us to call the local Early Intervention Program to have Becky evaluated. Three professionals promptly visited our home, observed Becky at play in her familiar surroundings, quickly determining that she did indeed have a developmental delay. They welcomed us into their program which works with children, as deemed necessary, up to their third birthday.

We are extremely pleased with her progress thus far. Besides being delightful and funny, Becky is better able to interact with others, attend to partner or group play for a longer period of time, approximate a few words, sing along with songs, and use limited sign language.

Early Intervention Professionals work with Becky in our home environment so the she is comfortable, at ease, and, therefore willing to interact and learn. She has a lot of fun during their visits and learns through play. The visits are valuable to me, also, because, as an observer or participant, I learn ways to help my child. These Occupational and Speech Therapists have a wealth of knowledge and are available to answer questions and give advice.

The Waiting Game

At the suggestion of the Occupational Therapist, we made an appointment several months ago with a local Infant/Toddler Clinic to have Becky’s overall health evaluated. These doctors are the appropriate professionals for diagnosing Autism in very young children. But, since her appointment with this clinic is still four months away (there is a very long wait to get an appointment here) her third birthday will be just around the corner.

At three years old, the current services to which Becky would be entitled transfer from state mandate to that of our home town. If she does indeed have Autism or Pervasive Development Disorder (PDD), valuable time and services will be lost by waiting these next few months.

After the frightening non-answers to my questions about Autism, I was informed about some other evaluation options available to us. A study of very young children with Autism and its effects on their families is being conducted at Boston University. After briefly researching this Child and Family Project and contacting the sponsors, my husband and I have decided to take part. Within the next month, we’ll be interviewed at our home and fill out extensive written questionnaires pertaining to Becky’s overall development and her abilities up to this point. Becky will be observed and videotaped at play during a child visit to the university.

After we’ve completed these three aspects of the study (the parent interview, the questionnaires, and the child visit), the sponsors will evaluate the data and provide us with a preliminary diagnosis. If she is found to have Autism, we will participate in the study for the next four years to help researchers gather enough data to draw conclusions about the effect of Autism on families.

The purpose of seeking a diagnosis for Becky is two-fold. For the researchers, a diagnosis means another child for their study, of which they currently have 75, with the intention of including 300. The more children studied, the more accurate the data and conclusions, and hopefully, more knowledge and understanding of this, as yet mysterious, disorder.

For our family, a diagnosis entitles Becky to a much wider array of services to help her learn to communicate well. As I watch my bright, funny, sweet toddler at play, I know that I will do for her whatever is necessary so that she may have a happy, meaningful, successful life. The service programs through EI are intended to help children under three year’s old work toward their potential at a much earlier stage in life than most children with Autism have in the past.

This more intense “earlier intervention” is seen as a huge step in assisting young children with Autism. As I understand it, the professionals believe that early, high-quality, individualized education greatly increases a child’s chance of making significant progress toward a higher life potential.

What to Wish For

In most situations, as a parent, I would wish for the answer regarding any type of diagnosis for my child to be negative. In this case, however, I don’t actually know what to wish for. If Becky is found to be on the Autism Spectrum, I will have hope that her communication skills will improve through professional intervention, parent education programs, and lots of time and hard work (and play).

If, however, the professionals determine that she is not in these categories, we are left with the question, “What is wrong and how do we go about helping her?”

In addition, although no one has yet given a definitive diagnosis or opinion as to the cause of Becky’s delay, it is apparent to me, through what I have read, observed, been told, and been advised to do, that Autism is a strong probability. And, since the people I have come to trust, who work daily with children who are on the Autism Spectrum, appear quietly concerned about my daughter, I will continue researching and asking questions until the answers start to make sense.